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what is EVIDENCE that IGG band 23 is Lyme Specific?

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Posted 8/12/2015 5:57 AM (GMT 0)
Hello,

I have been very ill for the last two years. I thought it was Chronic Fatigue Syndrome and Fibromyalgia. My doctor has no treatment for these, so wants to check to see if I have Lyme Disease. I have all the symptoms - (CFS, Fibro and Lyme share symptoms as you know). I had two Quest Diagnostics Western Blot tests - one in 2013 and one in May. Both indicated that I have reactive IgG Band 23. Everything else non-reactive.



I've seen tons of posts where people say that band 23 is Lyme-specific. But I can't find a source for those claims. It could be that people are basing their opinion on what others say. Do you know of any official documentation or lab reports that indicate band 23 as being Lyme specific?

I'm hesitant to spend the $500 plus for labs and $550 for my doctor to give me the test results.

I can't recall ever having had a tick bite - but my poor little dog had them all the time.

I also had a rescue cat who scratched me. I got sick after that back in 2004. Could that be a Lyme co-infection?

I still feel intuitively that I have CFS and Fibro (triggered by mercury amalgam vapor) and not Lyme. I'm just trying to understand where to go from here. Suffering badly every minute of every day.
Posted 8/12/2015 10:55 AM (GMT 0)
Published medical research points to band 23 as Lyme specific. Read this:

http://lymetwistontherocks.blogspot.com/2011/01/western-blots-what-do-all-of-those-darn.html

You most likely have Lyme. Make an appointment to see an ILADs trained LLMD.

CFS and Fibro are just names for a collection of symptoms that the medical community has not yet found the cause.
Posted 8/12/2015 2:36 PM (GMT 0)
As tickbite says, CFS and fibro are not real diagnoses. That is just a name for your symptoms. So when you say intuitively you have those symptoms, I'm sure you do have the symptoms but that is not a real diagnosis. Something has to CAUSE CFS and fibro and IMO mercury would not. You may have heavy metals in addition to an infection.
Posted 8/12/2015 2:38 PM (GMT 0)
Hi Life Is Sweet!!!
Welcome to our community!! I'm so glad you found us.

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.​

Here is a link to an article explaining that Band 23 is indeed a Lyme specific band:
"We have found that sera from patients with early stages of Lyme disease contain predominant immunoglobulin M reactivity to a major 23-kDa protein (p23) from Borrelia burgdorferi 2591 isolated in Connecticut."

www.ncbi.nlm.nih.gov/pubmed/8225587

And think of it this way - what if treatment for Lyme and the other infections that can come with it helped you feel better? Would you really care what anyone called what you had if you just felt better? I would most definitely encourage you to not only get tested, but to see an ILADS trained doctor to be properly evaluated.
Posted 8/12/2015 8:05 PM (GMT 0)
Wow! Thank you all for your insightful and evidence-rich responses.

I just spoke with someone at Igenex. She was adamant that testing positive for Band 23 is not evidence of Lyme. I asked twice. She said band 31 is likely to be Lyme specific.

But let's assume I have Lyme -

A couple things - I'm concerned that if I get antibiotic treatment based only on Band 23, I may get very, very ill. I am finishing a course of Rifaxamin and Neomycin and it has devastated me. How could I go through MONTHS of Doxycycline? It could kill me.

Also, there a different camps of thought about CFS, its causes, as well as Lyme and Mercury Toxicity. The SIBO/Leaky Gut (as a cause of autoimmune disease) camp is quite adamant they are correct. CFS is an incredibly complicated illness with causes that have nothing to do with Lyme. They don't know what the unifying characteristic is yet for people with such heterogeneous symptoms, but it could be viral, our genetic or any number of things not related to Lyme.

So, my question to you is - How did you get through the months of antibiotics? How did you survive (keep in mind, I have severe illness and can get up no more than one hour a day)?

And more importantly - did anyone feel better?

Thanks again!! So fortunate I found you.

Post Edited (Life Is Sweet) : 8/12/2015 2:21:12 PM (GMT-6)

Posted 8/12/2015 8:26 PM (GMT 0)
Have you had a chance to read through our "New to Lyme?" thread yet? In it you will see that detoxing suggestions are posted, and we talk about detoxing a TON here. It's key to getting through treatments. I learned this the hard way when I was trying to get treated the first time around in 2007. No one understood how important detoxing really was, and so I didn't - and ended up 3 times sicker than when I started treatment!!

I had to stop treatments and detox my body - then I choose a more gentle way to treat these infections and detoxed like a mad woman all the way through!! After 40 years of living with these infections, I had lots and lots of toxins built up!

Yes, quite a few people with Lyme have leaky gut. It can be healed though.

I have been healed for two years, was reinfected with Lyme last summer, and healed from that before the first of this year, and have no remaining active symptoms. So yes, this is more than possible to heal from. Challenging? Yes - it's no walk in the park, but it's a lot better than living with the symptoms and damage that happens!!
Posted 8/12/2015 8:30 PM (GMT 0)
L is S,

I got bit 10 years ago, had the EM rash, and saw my PCP who gave me doxy for 30 days. I had only IgM 23 show positive in my first two Western Blots when I got bit, and a third test taken three year later when strange neuro and arthritic Sx started.

I've been on abx for the better past of the last 5.5 years fighting the three B's, and got up to 80 to 85% well last year. You do survive, and you can get better. I just restarted ABX a few weeks ago due to a relapse soon after I stopped abx last April.

When I get back to 85% again, I'll just stay on a maintenance dose of ABX for the rest of my life if that's what it takes.

good luck with your treatment
Posted 8/12/2015 9:16 PM (GMT 0)
Tickbite - have you thought about doing the pulsing - three weeks off the antibiotic and six weeks on. At least you would be giving your body a break from the antibiotics.
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